Concerned Kildare mother urges Health Minister to help her daughters

A concerned mother from Maynooth has called on the Minister for Health, Stephen Donnelly, to help her two daughters.

Gráinne Ui Luing is the full-time carer for her two daughters, Caoimhe (aged 8) and Fiadh (aged 6), both of whom have cystic fibrosis (CF).

CF is a disorder that damages one’s lungs, digestive tract and other organs: it is an inherited disease caused by a defective gene that can be passed from generation to generation.

Explaining how her children manage with CF on a daily basis, Gráinne said: "In order for our girls to lead a ‘normal’ life they have to do daily probiotics, antibiotics, nebulisers, inhalers and constant physiotherapy; their therapies can take up to an hour a day before school and if the girls are unwell that has to be multiplied by two or three times a day.

"We have yearly bronchoscopies, CT scans, X-rays, blood samples, ultrasounds, lung function tests."

DISPUTE

Gráinne explained that in May of this year, she discovered her daughters, along with 33 other children, are being denied a 'life-changing drug' named Kaftrio due to a pricing dispute between Vertex, the pharmaceutical company which is based in Boston, and the HSE.

This development greatly concerned Gráinne, who said: "We have no idea why our children were excluded from the deal or how they were omitted from the contract, but these 35 children are being completely discriminated against.

She continued: "CF Ireland have continuously requested meetings with Minister Stephen Donnelly to push negotiations.

"We need this issue to be at the forefront of health conversations as everyday our children are without this drug is one day too many."

Fogarty stars as St.Laurence's beat Confey in perfect SFC Group D start

Homes in Kildare at risk from radon gas

Retrofit

RESPONSES
Commenting on its decision, Vertex told the Leader: "The long-term reimbursement agreement for Vertex’s cystic fibrosis medicines in Ireland took into account everything we knew about our medicines and our pipeline for CF at the time it was signed, five years ago in 2017 with the HSE.

"Approximately 1,000 patients have received reimbursed access to Vertex medicines through this agreement, the structure of which provided budget certainty to the Irish State.

Vertex added: "However, since the agreement was signed, the knowledge and data regarding how our medicines provide clinical value to CF patients with different genotypes and younger age groups, has evolved.

"The 35 patients in the 6 to 11-year-old patient population with specific genotypes were not included in the original agreement because it was not known at that time that our medicines would work in these patients."

Minister Donnelly’s office said: "Since his appointment, the Minister for Health has at all times prioritised the needs of patients and has, at every opportunity, made himself available to meet with patients and patient groups.

"Kaftrio has been a life changing drug for Cystic Fibrosis sufferers, and the Minister wants to see it made available to everyone who needs it."

INAPPROPRIATE TO ENGAGE

"We are advised that commercial discussions between the HSE and the manufacturer on extending the availability of the drug to these children are at a very sensitive stage, and that it would be inappropriate for the Minister to engage with CF Ireland while those discussions are ongoing."